Went to my neurotologist today and she was not positive about the anti-viral regiment. She says studies have shown that it has no benefit and that these drugs can have severe side effects especially on a pre-diabetic like myself. Her final statement was that "don't you think if they were effective all doctors would be using them?" Not quite the reaction I expected and now I am confused and scared, even thought I have gotten Valtrex from my GP and am ready to go with it. She was not impressed when I told her that I knew some people who got relief. She wants me to stay on steroids one more month, since my hearing slightly improved since last time, and I got a new tube (when the old one was removed I got a vertigo attack), but no wick this time, to "avoid an infection." I see her again in one month. For my horrific headaches, I was referred to a Neurologist and also some sort of tinnitus coaching! My God, this illness, is incredible and so imprecise: I am finding that there is so little known about it.....medicine in some aspects is so primitive!! She did indicate to me today, that I have "some level" of Meniere's disease.
Ugh. I have to make this brief because I'm up too late, but that is crazy logic to say if it worked everyone would be using it. Of course there are times when treatments are new and not everyone is using them. The anti-viral medication is very specific to the viruses, and all I've heard is that they are very low side effect so I just did a quick Google search on anti-viral pre diabetic, and I got a page full of hits that they helped alleviate diabetes. Now, I'm not a doctor and that is not a conclusive study, but it sure was reason to have pause about her statement. I did study Biology, so I have a science questioning mind. "Why would it help?" I thought...maybe reducing stress from viruses? I don't know. I do know that she sounds defensive. Plus! a month of steroids has known side effects. You also might find it helpful to email Dr. Gacek. Lots of good wishes to you finding your way through this.
More questions than answers; Have either your GP or Neuro mentioned MAV? Have you had all of the tests available to support a diagnosis of Meniere’s and/or MAV? Is she saying that the steroids and the Valtrex trial are mutually exclusive? Have you shown the Neuro the Gacek’s studies? At worst they should support the idea of a trial. Unfortunately there are no certainties with an idiopathic condition. It is a game of trial and error.
Believe it or not, it has worked for me and it is 8 1/2 years now. As for everyone would be doing it, i have been on this board almost ten years. During that time it has gone from one or two people talking about success with antivirals to many many people saying they have had success. Family doctors seem more open to giving antivirals a try perhaps because they have had more experince with these viruses and see little risk in giving it a try. Most neurotologists are surgeons who have spent years perfecting surgical solutions to this disorder.
I can understand your confusion. It is difficult to know which treatment plan to trust. We each have to decide what course of action to take to try to control this illness. However for me, it was a no-brainer to try the antiviral treatment plan. After doing my own research and becoming my own advocate, I did consult with my GP (who actually prescribed my Valtrex), but I also contacted my vestibular specialist at Johns Hopkins and even she was on-board with the idea (gotta say it surprised me a little). This particular Dr had been the one to truly beiieved the MAV diet was my answer. I adhered to for four months with no improvement. Her alternative plan was to start some anti convulsion meds or some other drugs which all sounded disadvantageous to me given their side effects. So I held off on her medical advice, hoping/praying that something else would be my answer. That is when I found the antiviral approach and liked what I saw in terms of success percentages. To my knowledge (again I am no medical professional) these antivirals have very little to any side effects, even at the highest dosage suggested by Dr Gacek and others. I am now into week four of this plan and have had remarkable improvement from what was my daily "episode" routine. It isnt perfect, but I do have faith that it is working. As of now, I intend on staying with the high dosage for at least three months before I start the lower dosages. Even though I realize not everyone has benefited from the antivirals, I was willing to give it a try in hopes that I would be one of the success stories. I knew I had nothing to lose in giving it a shot, and maybe had a lot to win. It may not be my final answer, but only time will tell. Good luck and please let us know what/how you're doing.
Jimmy, did this doctor show you the "papers" proving that it doesn't work? Any actual proof about the alleged side effects? Valtrex is used widely by people with shingles and herpes. Funny how they're not all dying from the side effects. The truth is that antivirals are one of the safest drugs on the planet and regular blood work can ensure proper kidney and liver function. Ok, here are the facts. Dr. Gacek reports a 90% success rate of the TOUGH cases. He told me in writing that the only side effects that have been reported over the 10+ years he's scripted antivirals is a few cases of gastritis, which went away immediately after reducing dosage. Other centers are reporting the same 90% success rate. Your doctor makes no money from scripting antivirals to you. Check the bill to see how much they make from steroid shots, etc.
Yes, I checked my bill and each of those shots in the ears cost over $1,600.00 and I have spent tens of thousands since November. While on the antivirals, why do I need to check my kidney and liver functions? Do the antivirals stress these organs? Just trying to make sure I am doing the right thing. I have seen three ENTs and one Neurologist, one said I had Meniere's; one never said what I had; the Neurologist-Otologist said I had inner ear cochlear hair damage that will probably not improve; and the other seems to not want to say the word Meniere's. The latest ENT-Otologist says there is not much difference between Meniere's and Hydrops and talks about the difficulties of precise definitions/classifications when I asked if I have Meniere's. I had some test with air in the ears and following lights around, but it was "inconclusive." They said my hearing loss is too severe for other tests at this point. I don't know what I have? What a hell of a situation I am in. Here are my symptoms: Dizzy/lightheaded almost all of the time Only two vertigo attacks in 5 months Slight nausea, but no throwing up Migrane headaches every day and worse at night Dizzy when leaning over Severe hearing loss Hearing distortions (the docs have trouble with this one) Mental fogs and depression Difficulty sleeping Terrible tinnitus including a roaring/pulsating sound I feel sick almost every day, and especially when getting out of bed Difficulty in grocery stores and restaurants and talking to loud people Avoidance of social situations despite new Starkey hearing aids Difficultly hearing radios/TVs etc, and sometimes painful
Based on your own words and the failed treatments to date, it's time for a new Dr. One of the definitions of insanity that sticks with me is " continuing to take the same course of action and expecting a different result." I recommend you stop doing what does not work and try a different approach. That would be the logical course of action.
Yeah, exactly. In VERY rare cases, it can hurt those organs, but the damage is very slow IF it occurs, and once a year blood work is all that is required to keep on top of it. I shared almost all of these, with almost daily attacks and drop attacks near the end. I was really ready to die and had my suicide planned out. If it gives you hope, i am 100% now, with full hearing restored. I cannot say this works for everyone, but antivirals should be given a shot if you think it's meniere's.
Thanks Tom, I have also thought about whether or not I want to continue in this fix. The joy of life has dissipated significantly. Feeling dizzy and sick every day, is so hard......
Jimmy, my heart goes out to you. I know how miserable all this is, and it can be tough to untangle. I have had almost all of those symptoms--variations on some, and some you don't have. I have ended up having at least three things. Meniere's (which has been helped hugely by anti-virals and JOH), MAV (which has been helped, also hugely, by addressing Migraine triggers and by acupuncture), and BPPV (which was taken care of by the Epley Maneuver). It's bad enough dealing with these conditions with supportive practitioners. It is pretty unbearable with people who are not supportive. I encourage you to spend the most time with the practitioners that you feel you communicate well with, and to trust your instincts. I really believe that you will start finding solutions, and it will get better. I had an ENT early on who said to me, "I don't want to call it Meniere's because that's a deadend diagnosis." I wish I had gone home and looked up Meniere's that day. I think I would have been able to save more of my hearing. Do you know if your hearing loss is worse in the lower ranges? That is a good tip off of Meniere's.
Most people will tell you that the main difference between full blown Meniere's and hydrops is that Meniere's includes vertigo attacks while hydrops doesn't. Some people have vertigo on a regular basis while others have had only one or two over the course of several years. At one point I was having vertigo at least once a week but I haven't had a major attack in about a year. I have recently had though what I refer to as mini vertigo attacks which I'll probably post about shortly. Regarding anti-virals, my neurotologist also doesn't believe in them and mentioned studies that showed they weren't effective. I didn't ask for the details on this but I have a follow up appointment with her coming soon and plan to discuss this with her again. She did mention to me though that she would have no problem if I went to another doctor for anti-virals. The impression I got was that while she herself isn't willing to try things on her patients she doesn't believe are effective, she understands that people will resort to other methods if they believe it might help them. She even mentioned to me one patient of hers who claims to get relief by injecting himself with hormones of some sort.
If those studies actually existed, then the antiviral trolls would have gleefully posted them here long ago. The fact is that Dr. Gacek has a 90% success rate with over 1000 patients over a 10+ year period. His son has the same success. Other centers are reporting the same success. It doesn't work for everyone. But it's worth a try and we've seen dozens of people now on this board who have found relief.
Have the other centers who have reported success published any reports or studies? If so, where can they be found? It would be helpful to bring this info in addition to Dr. Gacek's to our doctors.
As far as i know, Gacek is the only one who has published his findings. A double-blind placebo-controlled study would be the next logical step. But that probably won't happen given that there's no money in it for them to do so.
BytheBay, my hearing loss is drastic in the low ranges. It is so strange because I hear high pitches so well, and then nothing. It makes it sound like the world is screeching at me. It plummets from high to low. It varies everyday--some days I can barely hear bass, and the next day I cannot hear it at all. Today, a horrible day, as very little of my hearing of any type is there. The television sound is weird and hard to listen to even with hearing aids. A fan running on an air cleaner drove me crazy this morning. The hearing aids help, but the tinnitus/roar are now louder than what I hear. I have heard from two ENTs now a reluctance to give a clear diagnosis of Meniere's. I just cancelled a trip to Las Vegas in April because I don't think I can make it....sad about this. I don't think I could stand the flight. Also, I think I am so tense, my neck is frozen and hurting.
Try antivirals. I had the same thing and my hearing is normal now. Talk to your family dr. See if they will prescribe it so you can see if it will work for you before you try much harsher drugs, destructive surgery or abandon yourself to profound hearing loss and vertigo. Let them know you dont expect a guarantee but the risk is so small with antivirals and so great with the standard treatments which are not helping you. Go in with the info on how much of which drug and some printouts of studies. Dont try to bully the dr or question their medical opinion, just ask them if they will rx this so you will know you left no stone unturned.